- This topic has 4 replies, 3 voices, and was last updated 2 months, 2 weeks ago by
Dagmar Munn.
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March 7, 2023 at 1:01 am #23629
We all need a little motivation and a space to lift each other up because living with ALS is challenging for both patients and caregivers alike. And sometimes it helps to read about other’s small positive moments – – to help us see that we can have those moments too.
So, please share something good that happened to you this week. What’s something big or small you want to share?
There’s no time limit on this discussion/topic… Feel free to share your thoughts any day, anytime
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March 20, 2023 at 11:18 am #23679
I can say that I was able to have a restful, good night’s sleep all last week. Perhaps it was the change in weather (Spring on its way!) and there’s less need to have the heater on at night. Good sleep has always been important to me, especially now with ALS – – a restless night is amplified the next day feeling stiff, bleary-eyed, and foggy-brained. But after a good night’s sleep… ahhhh!
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March 22, 2023 at 11:14 am #23689
First off, I must confess to being jealous of signs of spring. We’re just a short jaunt from the Canadian border, in far upstate New York. Snow and ice are still very much Order of the Day here. Can’t wait to actually see grass again!!
I have likewise been sleeping well, and you’re right in that a good night’s sleep sets the stage for a good day. Beyond that, I anticipate being evaluated soon for a Bioness L300 Go. I’ve been wearing an AFO on my left side since my diagnosis nearly seven years ago. If the Bioness is successful, it’ll be a good day when I can put the AFO in the closet until it might be needed again. My first clinical weakness was left hip flexor and foot drop on that side when fatigued.
Good day to you madam, and may we both continue to gain the strength from good nights of sleep … 🙂
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March 23, 2023 at 3:22 pm #23694
My only child, Rob, and his gf Emily flew in from Chicago for my 62nd birthday! He’s a chef & made homemade tomato soup then made a pork tenderloin & pears for dinner, everything was SO good! After 30 years of living with ALS, I’m still able to eat 95% of what I want & I enjoy it whenever he cooks! 🥰
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March 23, 2023 at 4:03 pm #23695
The meal sounds yummy! And a happy birthday to you too!
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May 8, 2023 at 8:07 am #23930
What’s going on with me…Linda is not on oxygen 24/7…getting used to that…has some travel bottles but has not had to really use them yet…one once…this next week is going to be hard for me… Monday labs and palliative introduction…a pulmonary appointment…hoping to get a portable oxygen machine for her, even though she does not want to go out…she gets tired very easily…then Wednesday a trip to the dentist for me who originally noticed her speech…” you need to push you, doctors, to check this out…it was not the cervical stenosis like they thought and had a five-hour operation…I want to thank the dentist for her persistence…but then look at the results…anyway…got a reclining bed for her…getting used to that… a busy time…
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